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Today is Mother’s Day but this post isn’t so much about being a mother as it is about family. A few weeks ago, going through my mom’s things left to me on her passing, I rediscovered my grandmother’s mother’s ring. These rings are the piece of jewelry given to many moms with birthstones representing their kids.

I slipped Grandmas ring on and it fit perfectly.  Like it was made for me.  I have found myself looking at my no-longer-young hand and thinking of Grandma.  blog4Remembering fondly the many summers spent with her, my aunt & uncle and cousins who enriched my childhood. Time and distance, families and responsibilities of our own means close family ties get farther and farther apart, but those memories are precious to me.  Baseball games, Marco Polo, Del’s lemonade, Tripoley….fun.

As an adult who had great conversations with my Uncle who is no longer with us, I now realize they worked hard to help improve a childhood they knew was not easy.  Uncle Bob & Aunt Pauline were the example of a loving married couple who doted on their kids and took in my Grandma and cared for her.  Contrast that to my own Mom’s example of three marriages (by the 70s when divorce wasn’t as common), walking away from two kids, emotional abuse….

I feel eternally grateful that I had summers living with a family that not only showed me what family was supposed to be like, but gave me a goal to achieve.  I wanted for my kids what my cousins enjoyed.  God is good and I married a man from a similar emotionally unhealthy childhood and we broke the cycle we could have repeated and instead created a close family with lots of love and memories of our own.

Mother’s Day is not an easy holiday for many.  We didn’t all get the moms we wanted and even as adults may still be dealing with toxic relationships and hurts.  If this is your story, I am so sorry.  I feel your pain.

I won’t be thinking of my own mom today with gratitude; I just can’t.  Instead, I’m focusing on the whole family who helped me grow to be the person I am now.  I’m remembering summers in Pawtucket.  I’m thinking of my two guys knee deep in final exams.  Praying for my many “kids” I’ve adopted in my heart as my own.  Dreaming of a future in our soon to be home of West Virginia, the birthplace of all the kids in Grandma’s ring.  And I’m hoping that when my boys are grown and raising kids of their own, they will remember their mom as the person who loved them beyond measure and was proud of the men they became.

I am not a shopper.  I don’t enjoy trying on clothing in super bright, tiny dressing rooms with mirrors larger than should be legal.  While suffering from an iatrogenic illness for two years, I lived in pajamas and leggings.  Friends who visited knew to expect a female Hugh Hefner lounging in pjs no matter the time of day.  My best girl friend even understood when I managed family visits to her home while sick – I showed up in pajamas and brought my slippy socks.

So, today was not wonderful in that I had to go to Dress Barn to begin the chore of finding clothing for my oldest son’s upcoming college graduation.  Cue the abysmal rain and poodle-like hair to put icing on the experience.  Part of my remaining brain symptoms include inability to make decisions and sensory overload from things like muzak, colors, clothes racks, other shoppers, etc.   I met the loveliest sales associate, Marina, who clearly has the patience of Job.  I couldn’t have made a choice with a gun pointed at my head.  The colors all looked too much – too similar and too different at the same time.  Does this fit?  How fat does this make me look? Will this be good inside if it rains, outside if it’s hot?  I kept returning to her for validation and input and even I was frustrated with myself.

God is good and I managed to find two outfits for the two days of events, but most importantly, I managed to do this dreaded chore without a revving of any symptoms.  I found Marina in the back of the store when I was ready to leave because I wanted to make sure she understood the value of her role today.  I wasn’t just a customer.  I am a person reentering the world with some remaining damage who faces each new challenge with trepidation because it’s hard.  blogHad the store employee been unhelpful, snarky, unlovely, I would likely have left with nothing and been frustrated because it was too much.  Instead, she smiled throughout, was encouraging, patient, KIND.  I think people forget the real value of human kindness.

I thanked her for her help and she gave the woman-conditioned response of “no problem.”  I then explained I’m recovering from a brain injury and this was my first time out having to do this and that I only got through it because she was so nice.  And, since I’m now hyper aware of the value of every single moment of life, I began to cry.  Niceness.  That’s all it takes to make me grateful to be back among the living.  Marina understood then how grateful I was and immediately reached out and gave me a hug and well wishes for health and to enjoy the graduation.

I was very lucky during healing to have the support of my husband and sons, several close real life friends, fellow victims of benzos and Facebook friends from various stages of my life.  I hope one permanent effect of damage from Ativan is that I remember how important it is to be kind to people.  We really don’t know the impact we can have on a person….a customer looking for clothes, a lonely senior citizen, a stressed student, a stranger reaching out via social media…..

“I expect to pass through this world but once. Any good therefore that I can do, or any kindness or abilities that I can show to any fellow creature, let me do it now. Let me not defer it or neglect it, for I shall not pass this way again.”

William Penn

I have realized over the last few weeks as I experience more good moments, hours and days, that I think my benzo journey is finally over.  Those are scary words to say because we learn on this road that Satan is listening so he can jump on your moments of joy.  But, I am willing to take that risk in order to step out on faith and say that my health is better now.  I am grateful for my family who never wavered in their support, my new friends who partnered with me to get through this awful iatrogenic illness and my old friends who stuck around to see me re-emerge from hell.  God has been good throughout.  blog

So why the title for this post?  Limbo seems like a bad place, especially if you have a background in Catholicism.  But I’m using it as Webster defines: an intermediate or transitional place or state.  After 2 years of living a mostly housebound, isolated period of illness, life can’t revert back to pre-Ativan Sue.  I’m not that person, and the world is different now.  A friend gave a great analogy – returning home after 4 years of college left her feeling like an outsider among lifelong friends.  I’m having that same feeling, except my 2 years away weren’t filled with college adventures and fun memories. 

My husband is eligible to retire in January, and our youngest graduates college in 2017.  We had planned to stick around until his graduation and then relocate to West Virginia.  One lesson we learned from this illness is that life is short and tomorrow is not promised.  We have changed plans and this time next year should be moving into our new home.  My job is to ready our house of 20 years for sale.  I’m going through every closet and room, donating and tossing.  The upside is I see my accomplishments and feel pride that I am able to do this after such a period of inactivity.  It feels great to contribute in a meaningful way to our family again.  The downside?  A lot of tears as I revisit the past.  Every piece of artwork, old photo, notes of encouragement has me emotional.  Improvements to the house are meant for resale, decisions are based on recouping money spent and life still feels tentative.  We begin house hunting in the Fall and I am champing at the bit to begin my next phase.

But, if you have to live in limbo, put on the song and dance your way through it.  Time passes either way, enjoy it while you can.

I can vividly recall being excited by certain landmark birthdays.  Turning 13 and becoming an official teenager.  The Sweet 16 of blissful youth.  18 and believing that to be the sign of adulthood.  And, of course, 21 because legal drinking and partying at that age seemed like a sweet deal.

After those numbers, though, what woman looks forward to any increase in age?  I was always happy to attend the birthday lunches, buy gifts, celebrate for my friends, but I hated the same being done for me.  There were even birthdays where I insisted that I didn’t want friends to sing Happy Birthday.  So they hummed it.  Which is even longer and more painful than just singing the stupid song.

And then I got sick.  Starting in January 2013 my world changed.  I basically slept, suffered, hid and hurt my entire 48th year of life.  Only about 6 months into being 49 did I start to feel big improvements in my brain and central nervous system and know that I would heal and get my life back.    bday

Today I turn CELEBRATE my 50th birthday.  I rejoice and embrace the fact that I am alive.  Life is better than I deserve.  I’m almost completely healed and I have this sense of awe about how little it takes to be content.  My husband and I have several times wondered if given the chance to turn back the clock, would we rewrite history and delete the part of our lives which involved 2 years of recovering from damage caused by a prescription drug.  Would we avoid all that pain and suffering but also lose all the blessings which came from the experience?  As hard as it is to imagine, we wouldn’t alter our past.

No, this is not the life I envisioned.  I never imagined the level of physical and emotional trauma I endured.  I both needed and hated the isolation as every day brought new suffering.  When my youngest went to college the plan was I would return to work and be the scholarship fund.  Those plans disappeared thanks to Ativan and big pharma.  But on the flip side, I also never understand how strong I could be, and how I could learn to love myself.  I witnessed a husband more amazing than imaginable as he partnered with me.  My boys show compassion bigger than their maturity level should allow as they support a sick mom.  Blessings are everywhere if you stop and look at the world around you.

So…my birthday wish for each of you is to encourage you to find joy where you are in your life right now.  None of us gets the fairy tale we dreamed of as teenagers.  That’s just not reality.  There are disappointments, loss, financial challenges, illness….many things which make fairy tale existence impossible.

But this is our one life.  Embrace what you have, make the most of the gift of time and let your friends sing Happy Birthday as loudly and badly as they can.

Swim or Drown

It was only this morning when talking with my husband about what I’m feeling, or not feeling, that I realized I am in a wave.  My first in the 6 months since ending the Ativan taper.  A wave is a period when symptoms return or get stronger.  For me this wave has included increased fatigue, emotional blunting, apathy, inner body vibrations, fear and some physical pain.  Waves come and go and there is nothing to do but ride it out.  Surfer cutting back on a wave

After 6 months of feeling pretty good, my logical side required a list of possible reasons why I’m thrown back into this mess.  I could guess that the stress of holidays, increased activity with kids home from college, doing too much because I did so little for so long, eating out with who knows what going into that food, not following paleo while kids are home……..

All of those could be contributors, but the issue with neuronal healing from this iatrogenic illness is that nothing is linear, the time scale is unknown; we can expect that sick-to-healthy even after a taper takes time and patience.  I think this wave is a good reminder to me that although I am better than I was, I still need to treat myself gently.

I hope for those who watch my journey or are following behind, that my honesty is helpful.  My fellow warriors compare even when we know logically that each of us is different.  A wave doesn’t mean I’m drowned, it means I need to call in the lifeguard, tread water and rest as I build up my strength to keep going.

I attended a holiday party recently and left feeling quite sad.  I felt misunderstood and invalidated.  I know people try to be kind, but I’m not sure they understand how discouraging some comments can be….and how this experience has affected me and my family and continues to affect us.  Instead of advice telling me how to fix this, or praising yourself when explaining how you never take medications, all a benzo victim needs is validation.  Accept that what we say is true.

In God’s perfect timing, a trailblazer in the benzo community, Matt Samet, published an article today which fits what I feel perfectly.  I hope you take the time to read what he wrote to understand what this experience does to those of us damaged by big-pharma.  Matt and many others are given benzos as part of the “treatment” designed by the psychiatric machine but….

if you don’t have a “label”, and haven’t been to a psychiatrist, that doesn’t mean you are safe.  That doesn’t mean you can poo-poo his words and think “well, I don’t have those type of “issues”, so I don’t need to know or worry about benzos.”

I was a happy, healthy 40 something female who was on no medications and living life.  I went to my primary care physician after months of a burning sensation in my tongue.  My tongue.  That was diagnosed as hormonal and common.  Take this pill.  We raise our children from infancy to believe the people in the white coats know what they are doing and will make us better.  I believed my doctor.  Three months of as needed use of Ativan (lorazepam, a benzodiazepine), and I’m suddenly a broken victim who has to spend 17 months tapering and hurting while I try to repair from the damage done only because I trusted my doctor.

 

Here is Matt’s post which meant the world to me today:

http://www.madinamerica.com/2015/01/burden-proof/

 

Live Consciously

Today I celebrate 19 weeks since completing my Ativan taper.  I am not 100% well.  I am not even sure I remember what 100% healthy feels like, but I am content.

After 17 months of a taper for a prescribed medicine taken as directed for 3 months (how insane is that?), one thing which worried me was how to reenter the world.  I am now at almost 2 years since the medicine damaged my brain and central nervous system, and I am still finding out who the new me is.  There is a quote used a lot by those healing from iatrogenic illness:

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure whether the storm is really over. But one thing is certain – when you come out of the storm, you won’t be the same person who walked in. That’s what the storm is all about.” – Haruki Murakami

So who comes out of the storm?  We aren’t the same.  There is no debate among the healed.  We universally express the feeling of serenity, things which previously were bothersome now roll off our backs.  We see things differently.  We are the people in “The Matrix” who took the red pill and now know the truth.  But then how do we relate to others who haven’t lived this experience, who still live a life where small annoyances are big and meaningless things consume so much of their time?  Who haven’t a clue, and often don’t care, of the pain we lived for so long.  blog

It is such a convoluted state in which to exist.  Everyone wants to be “normal” and do things which are easy, socially acceptable and don’t require sacrifice.  What we have to do however, is create a new normal.  This illness lasts for a long time.  That is just a fact.  Even after tapering cautiously and wisely, my body continues to heal and I can simply never go back to the state of “normal” it once enjoyed.  A typical healed benzo should expect that stress revs our symptoms, diet impacts our health, OTC meds can set us back, dental procedures may throw us into withdrawal again.  I will never be able to eat takeout Chinese food or drink a beer with friends.  That is just another fact.  It won’t kill me, but I will need to be aware of how I live and the choices I make in order to not re-injure the central nervous system.

For those still healing, I have advice which may or may not mean anything but here it is:

  • Start small.  You can’t go from coma to marathon overnight.
  • Reach out to the faithful; the friends who dried your tears throughout.
  • Watch your diet. We know gabas exist throughout the body, so anything going in can have an effect.
  • Please protect your brain. Yes, a glass of wine with friends would feel normal, but ultimately may cost you a price you can’t afford.
  • Take as much time as you need.
  • Love yourself.  You are a warrior who survived hell.  There is no stopping you.
  • Make the most of your health.  We have learned the ultimate lesson.  Health can be taken from us in a moment.

I am living this quote.  We all should live deliberately.

“Most people can look back over the years and identify a time and place at which their lives changed significantly. Whether by accident or design, these are the moments when, because of a readiness within us and collaboration with events occurring around us, we are forced to seriously reappraise ourselves and the conditions under which we live and to make certain choices that will affect the rest of our lives.” – Frederick F. Flack

Embrace Your Bent Branches

We are making our own rules these days, and decided since I missed the 2013 holiday season we would double this year’s Christmas festivities.  On November 16th my husband and I secretly put up the tree and decorated the house – it’s like being in the North Pole.    blog1

With just the two of us to relive our time capsule of holiday ornaments and memories, I was able to reflect.  We bought the tree we still use the year we married, 1990.  It was our first Christmas together and the first time our cats, Spike & Cal, had ever seen a tree inside the house.  Spike couldn’t resist her cat-nature and climbed into the branches to hide.  Of course, our brand new tree sustained damage.  One large bottom branch was bent and hung limply.  For some reason my husband found a WHITE shoelace to tie up that green branch to at least look normal. 24 years later that same white shoelace holds up the branch.

Now at almost two years since becoming ill, and not quite 100% healed, this year I saw the damaged branch differently.  It didn’t break, it bent.  It didn’t ruin the joy of the next 24 Christmases.  In fact, looking at that shoelace this year was like a movie rewind of my life and I was that 25 year old bride again alone with my husband with our whole life facing us.  Yes, he and I are both more worn, our own branches are bent, we have grayer hair than before, but it does feel like this new stage of life is an adventure that awaits.

The damage we sustain as we live in this imperfect world doesn’t have to beat us.  We can continue to grow.  We can be firmly rooted and know that despite the storms, the battering, the cats who jump on our weakened branches – we are stronger than we could ever have believed.

Find your white shoelace inside yourself. With a faithful partner. Devoted friends. God.

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